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Independent living - choice and control for disabled people - conference report 
The government's aim for disabled people is to:
1. End discrimination
2. Transform and empower disabled people
3. Give disabled people the right to work
James Purnell spoke of the need for a further revolution in the rights for disabled people. Specifically he emphasised the need for disabled people to have more power and for societies expectations of disabled people to be transformed. He also argued that the Government's planned welfare reforms are an important way to achieve these aims.
Several examples were cited, highlighting the effect of existing Government strategies in improving the lives of disabled people in relation to support into work and individual budgets (see our conference film).
The Minister stressed that the Government is still a long way from achieving its goal of equality by 2025. The next step is empowerment of disabled people. Individual budgets, as piloted by the Department of Health are transformative because they allow disabled people to design their own care packages and decide how and where money is spent.
James Purnell is looking at the possibility of extending the idea of personal budgets across other departments, including other money that is paid to disabled people.
Disabled people should also have a fundamental right to work. When the Labour Government came into power there were no programmes helping people on incapacity benefit back into work so it piloted the Pathways to Work scheme. As a result one quarter of those on it found work and a further quarter found they had a noticeable improvement in their health. The Pathways scheme has now been rolled out nationally.
The Government is committed to conditionality, not to punish people but to get people "through the door to find out the ways in which they can be helped back into work.
James Purnell has no plans to apply the notion of conditionality to employers, with regard to the employment of disabled people. He prefers to rely on both the powers under the Disability Discrimination Act and an extension of access to work, though he did not rule out introducing conditionality for employers if this would help disabled people into work. So far he has not seen any suggestions that were feasible or would make much difference for disabled people.
As part of helping people into work the Government is devolving responsibility to other providers who may be better placed to tailor work and work searching to disabled people's needs.
For those unable to work the Government wants to provide as much support as it possibly can. The more people who are in work the greater the resources that can be given to those unable to work.
Q1. There does not seem to be a joined up approach with regard to, for example, transport and accessible housing in order to give disabled people the support they need to get back into work. How can you ensure a joined up approach is taken?
A1. Joining up is hard to do. The Government has spent the last ten years trying to join up from the centre and has made progress. However, if a service is not joined up in the first place it is often difficult to address this at Whitehall level.
This is why the right to control for disabled people is so transformative because it empowers them to join up what they need rather than relying on others.
Q2. I am pleased that the emphasis is not just on disabled people going back to work but also on removing some of the barriers disabled people face in trying to access work.
The key to delivering quality services that disabled people can control is the commissioning service itself. My question is how do we ensure that the commissioning process "at the coal face" delivers what we want and is not just about trying to manage budgets?
A2. Essentially there are three forms of accountability - accountability to civil servants and ministers, accountability in commissioning and tendering, accountability to users.
Accountability to the user is best because it gives people power. The next best thing is accountability in commissioning. The least best is accountability to civil servants and ministers. Where accountability is being done through commissioning they key thing is how you can give power to the people in their job so that they can do it in the best way that they know how to.
Payment should be by results to reward the "what" rather than the "how". A good example is with regard to people with mental health problems, who will benefit from support provided by voluntary organisations, private companies and local authorities (the issue of local authority funding for providing such services is on the Government's agenda) rather than through the intervention of central government.
Q3. Disabled people welcome working opportunities but there isn't an even handed approach. What about the conditionality on employers to take on more disabled people and thereby create the kind of working conditions and situations which can be occupied by disabled people?
Many now see unemployment as a major threat which will undermine the good intentions of this Government. What about reviving the old employment quota system but with a properly applied system of sanctions?
A3. If there were a regulatory invention which worked the Government would not be against it. There have already been interventions with regard to the minimum wage and flexible working.
The question is given the consensus that quotas don't work is there some other way? That is why the Government is committed to extending access to work to cover the extra costs to employers and provide an incentive to employing disabled people.
It's right to say unemployment will have an effect. However this should be seen as an incentive to provide more support for disabled people to help them get into work rather than less.
Q4. A lot of people are concerned about the future of attendance allowance and the possibility of it becoming part of local authority payments rather than existing as an entitlement in itself. What are your thoughts on this?
A4. This is a useful point to add to the debate. However you don't necessarily have to collapse attendance allowance into local authority budgets. It's equally possible to take local authority budgets and add part of it to individual budgets.
This issue has to be addressed but currently the Government is encouraging views prior to formulating policy.
Q5. One of the things that has emerged from research on direct payments is that as soon as these are given the revenue authorities come in and say that the person being cared for has to work out tax and national insurance on what is paid out to carers. There are also other regulatory measures such as minimum wage rules, which are good in them selves but which act as barriers to individuals purchasing personal care.
Is there some way we can go through these regulatory problems and give people the support they need across Government level?
A5. This is an important question because you could kill individual budgets through well intentioned legislation. We need to be clear about the regulations necessary for people using direct payments and individual budgets and probably stick to that.
So we need to look at how we approach the minimum wage and the rights of workers as well as payments to relatives. But is the kind of regulation appropriate to a local authority equally appropriate to individual budgets?
These are not open and shut subjects there is a genuine debate to be had about them. We are engaging with the TUC, GMB and Unison about how these can be taken forward. We want to avoid a regime that discourages people from accessing individual budgets. We need also to look at PAYE in relation to individual budgets and are interested in your views on this.
Q6. It is encouraging to hear of your continued support for the Disability Discrimination Act and the Disability Equality Duty (DED) but our concerns are the the DWP and the HMRC do not currently meet their responsibility for the provision of information in accessible formats. Also Atos Origin, who are responsible for medical assessments, do not provide any advance information about the assessment procedure in accessible formats.
A6. We will take these points away and send a reply on them to Disability Alliance (Kate Nash).
Q7. We welcome the doubling of the budget for access to work. Does it have to take five years to complete the roll out? Is it necessary for third parties to assess those who are congenitally disabled?
A7. If we can get more money we will do it more quickly, but we were happy to get to doubling. This package has to be self funding from our point of view. Access to work is one of our top priorities. From our point of view the quicker we can do it the better.
We will think about whether something more rapid could be done for people with congenital disabilities. We will write to you about that point.
Q8. You haven't ruled out conditionality for employers if this would make a difference. We have advocated disability leave for people who have become disabled in work to undergo a period of training or rehabilitation to enable them to stay in work.
The Government has not wanted to go that far yet but we have canvassed for compulsory assessments for people who become disabled whilst in work coupled with an obligation on the part of employers to carry out the recommendations of the assessment, with a view to enable that person to remain in work. We think that this could be a powerful measure.
A8. We are considering this point, which was raised during the Green Paper consultation. The minister is not sure that any suggestions have been transformative whereas access to work and pathways to work are.
Q9. Disability Alliance is an independent organisation, which is free of government subsidy. However it is a struggling organisation which informs and advises people about their welfare rights, which is the job of your department, so a little subsidy would not corrupt our independence.
A9. Ministers don't take these decisions, civil servants do. There is nothing to stop Disability Alliance applying to the DWP for funding but I wouldn't be the person who made that decision.
Q10. I have a question about those clients on employment and support allowance who are put in the support group of claimants. Unfortunately the support component has been set at a lower level than the disability premium for income support. As a consequence people in the support group who were eligible for the disability premium will get less. Have you plans to correct this?
A10. We will take this point away and send a reply on it to Disability Alliance (Kate Nash).
Q11. I endorse the previous questioner's view. This seems to work particularly harshly with couples. Something similar seems to have happened with the independent living fund (ILF) when new criteria were introduced which stop young people on youth incapacity benefit (IB) from accessing the ILF because they are above income support levels by a few pounds. Was that the intention?
A11. We are moving away from the principle of couple towards individuals.
Q12. There is a problem with the rules on ILF and access to work. Receipt of access to work funding is not recognised and can mean that a disabled person is taken off the the ILF.
A12. We will take this point away and send a reply on it to Disability Alliance (Kate Nash).
Anne Macfarlane gave a presentation entitled "Independent Living: Whose Agenda - from the past to the present, to our future".
Anne outlined the history of the movement towards independent living for disabled people, which began during the 1970's and early 1980's. She also highlighted some of the main barriers that disabled people face when trying to achieve independent living and made suggestions as to how these can be overcome.
She enlivened her talk both with examples from her own experience and that of other disabled people who have benefitted from having personalised individual care budgets.
You can view anne macfarlane's powerpoint presentation from the link below.
The Social Care Institute for Excellence have also produced a booklet entitled Personalisation:a rough guide, available on their website at www.scie.org.uk.
Julia spoke of her own experience of having personalised budgets. She neatly summed up her feelings, concerning the different approaches to providing care she has experienced, in terms of stages in life.
The infant stage - When she first required help with care she was receiving local authority direct services. This left her feeling helpless and powerless because the routine imposed on her was that dictated by the local authority and the workers it employed.
The adolescent stage - This was achieved when she moved over to direct payments and gained more control over the services she was receiving. This was an improvement over the helplessness of the infant stage but was still had some limitations.
The adult stage - Personal payments give her the freedom to allocate the money she receives in any way she wants. The only limitation is that it is related to her care needs. She cited the example of installing air conditioning in her room, which would help her medical condition and keep her out of hospital.
(taken from speaker notes)
Thanks for some very interesting and thought provoking presentations from Anne and Julia. I think they have certainly given us some food for thought to take forward into the workshops that they will also be helping us with, so make sure that you bring along any questions, concerns or opinions and share them there.
And the fact that we have had the Secretary of State James Purnell attend our conference today to speak I think demonstrates how important the issue of independent living is seen as being within Government, which I think is encouraging. The Independent Living Strategy aims to coordinate the policies of 6 government departments as you have already heard, across employment, education, health, transport, housing and more with the ultimate aim of delivering equality for disabled people by 2025, which I must admit seems some way off at the moment, so it is important that we hold Government to account on these commitments and monitor their progress because this offers great opportunities but also many challenges.
Encouragingly, the latest Green Paper on welfare reform, titled No one written off: reforming welfare to reward responsibility, even had a whole chapter titled “Delivering choice and control for disabled people” which laid out some questions about Independent Living and whether there could be greater integration between the current approach to independent living funding streams and the social security system, although there was very little actual detail about what shape or form this was envisaged to take. An advisory group has been set up, with disabled people forming the majority on the group, with more detailed proposals promised towards the end of this year.
Yet the Green paper also laid bare some of the paradoxical approaches of Government to the issue of independent living, in that at the same time as the Green Paper was asking questions about how to deliver choice and control for disabled people, in other chapters there are proposals for increasing the conditionality placed upon disabled people claiming welfare benefits, especially ESA. Rather than providing disabled people with more choice, many of the proposals actually serve to seek to control the behaviour and the choices of many disabled people who need to claim benefits.
And disappointingly, there was nothing really about the issue of disabled people living in poverty – the key thrust of the approach relies on moving people off benefits and into work, which is an aspiration that we support, where it does mean that disabled people are able to secure decent sustainable employment that really does deliver financial security. However, many disabled people remain in poverty when in work, and many more disabled people find that there are many barriers to them securing employment that are outside of their control, whether this is related to the nature of their impairment, employer attitudes, environmental issues and so on.
Leonard Cheshire Disability (LCD) has just published their 2008 Disability Review which found that there has been a small rise in employment rates for disabled people but conversely a drop in average household incomes, with both remaining far below national averages. With disabled people more likely to live in poverty than non-disabled people as well as likely to face higher day to day costs, we feel there is a strong case for Government establishing some form of minimum income standard for disabled people so that the year-on-year increases in relative poverty for disabled working age adults can be adequately assessed and strategies developed to resolve this issue.
A linked concern is about the future of disability living allowance and attendance allowance. I’m sure everyone here today has some awareness of the growing crisis in the funding of social care in England – it has been estimated that if the current system is left unchanged, there will be an annual £6 billion funding deficit, and with an aging population, this will only increase. Further LCD’s report has found that only 19% of respondents to their annual disability review survey used social care services, down from 34% a year ago, which is a decrease of 15%. This could well be evidence of the tightening of eligibility criteria as cash strapped local authorities try to manage hard pushed resources, something which would appear to be getting more difficult in the current economic climate.
The Wanless review of social care in England - Securing Good Care for Older People - made a case for the DLA/AA budgets to be subsumed into the local authority social care budgets, and ever since, disability groups have been lobbying against this move. As much as we sometimes criticise DWP for the administration and decision making on DLA/AA, we recognise the fact that for many disabled people, DLA and AA provide a valued source of additional income that helps to meet the extra costs faced by many disabled people and these benefits do, to an extent, work as individual budgets in that they can be spent as people wish, on whatever support service they require. So I think it is necessary to ensure that we keep on making the case for the continuation of DLA and AA as stand-alone income maintenance benefits.
As a side note, in Scotland, where social care provision is now provided free at the point of use to a degree, the Scottish Executive has faced financial problems with their scheme, because Government has withheld somewhere in the region of £300million in AA payments, which again reinforces this concern about the future of DLA and AA.
Beyond these factors and in recognition of the funding problems that I alluded to earlier on, the Government has been holding a public conversation, as they have called it, about Care and Support, since May this year, looking at 3 key questions:
• What more needs to be done to make the vision of independent, choice and control a reality?;
• What should be the balance of responsibility between the individual, the family and the state?;
• Should the system be the same for all or should there be variations in the allocation of state funding e.g. means testing, location, needs-based, etc?.
The Care and Support team have been running a number of events with citizens and stakeholders and emerging findings suggest that people feel the social care system must be fair, affordable and sustainable and that the primary responsibility for funding should be the state, although there are significant numbers who feel that individuals and their families must also take some responsibility. They also noted recently that the over 65 year old age group have over £900billion in equity in their properties, even allowing for the falling house prices which makes them the wealthiest generation ever collectively – Stephen Burke has suggested a 1% tax being levied on inheritance tax as a possible solution to the funding problems for social care provision – you may want to argue for other approaches in the workshop?
This part of the consultation closes on 28 November so I would encourage anyone in England to consider submitting your views and opinions on this, as we are expecting a Green Paper laying out options for the shape and funding mechanisms for social care provision early next year, and experience suggests that influencing and affecting the direction of travel becomes much more difficult once a Green Paper has been published. Website is www.careandsupport.direct.gov.uk. DA intends to use the points raised in the workshops to feedback to this review and I would encourage others to do likewise.
The two workshops were intended to stimulate debate with a few feeding Disability Alliance's response to the forthcoming Department of Health green paper.
Workshop 1 - Making personalisation a reality for disabled people - was presented by Julia Winter and covered issues to do with:
Workshop 2 - What is choice and control for disabled people? - was presented by Anne MacFarlane and covered issues within the context of chapter 5 of the green paper no one written off: reforming welfare to reward responsibility to do with:
This is a brief report of what was said at our Disabled people and work: access, discrimination and benefits conference. The views expressed, other than those by Disability Alliance employees, are not necessarily the views of Disability Alliance.
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